- Even though it is impossible, try to take care of yourself.
- If the baby is in the NICU, as much as possible try to hold the baby and rock the baby and provide skin-to-skin contact for the baby. We constantly talked to, and sung to, our baby when he was in the NICU.
- It is very difficult to breast feed a PWS baby. Nonetheless, if you are the breast feeding type, consider putting the baby to the breast for 5 or more minutes before each feeding.
- Hold the baby as much as possible.
- Let the baby see human faces and hear human voices as much as possible.
- Consider bathing with the baby.
- Make "nests" for the baby in every room and include the baby in all activities.
It is very difficult to breast feed a PWS baby. I was not successful. I tried to recreate the breast feeding experience for my baby as much as possible. I consider breast feeding a multisensorial experience for the baby
- Pump - as long as you can stand to pump, do it. Pumping provides the baby with important nutrients that are not available in formula. Perhaps the most important of these is the antibodies to protect against infectious disease. This is especially important because PWS babies are vulnerable to respiratory tract infections.
- Baby to breast - as much as you can put the baby to the breast. The advantages of this is that the baby smells you and gets the skin to skin contact. Also, it can be a peaceful and bonding experience for baby and mother.
- Bathing - for me, bathing with the baby created a relaxing time for me to be with the baby and accept the baby where he was. I was not working on feeding him, I was just accepting him and accepting me. The other advantage is that this time provided skin-to-skin contact for the baby that I believe helped him and helped my milk production.
- Lactation consultant - I believe whole heartedly in lactation consultants. They are wonderful and can be miracle workers. I think that you should balance their enthusiasm with the need to accept the baby where he is.
I had seen early versions of this research and my husband and I made a point to carve out time for me to bond with the baby. Even though he couldn’t breast feed, I put him on the breast for 15 minutes or so at each feeding and my husband then fed him through the tube afterwards (this also kept my milk up). Every night a took a warm bath with my son and we relaxed and I massaged him and played with him (if he woke up) for about an hour. We did it for this reason. It is time consuming, but relaxing and worth it.
Neuropsychopharmacology (2013) 38, 1154–1162; doi:10.1038/npp.2013.22; published online 13 February 2013 Parental Oxytocin and Early Caregiving Jointly Shape Children’s Oxytocin Response and Social Reciprocity Ruth Feldman1, Ilanit Gordon2, Moran Influs1, Tamar Gutbir1 and Richard P Ebstein3 1. 1Department of Psychology and the Gonda Brain Sciences Center, Bar-Ilan University, Ramat Gan, Israel 2. 2The Child Study Center, Yale University, New Haven, CTUSA 3. 3Department of Psychology, National University of Singapore, Singapore, Singapore Correspondence: Dr Ruth Feldman, Department of Psychology and the Gonda Brain Sciences Center, Bar-Ilan University, The Leslie and Susan Gonda Brain Science Center, Ramat Gan 52900, Israel. Tel: 972 3 531 7943, Fax: 972 3 535 0267, E-mail: email@example.com Received 11 October 2012; Revised 19 December 2012; Accepted 28 December 2012 Accepted article preview online 16 January 2013; Advance online publication 13 February 2013 Top of page Abstract Oxytocin (OT) has an important role in bond formation and social reciprocity, and animal studies indicate that OT functioning is transferred from parent to child through patterns of parental care. Perspectives on attachment suggest that the individual’s various attachment bonds are underpinned by the oxytocinergic system. However, prospective human studies that demonstrate the cross-generation transfer of OT as mediated by early caregiving and its impact on children’s multiple attachments are lacking. To address these concerns, the current study included 160 mothers and fathers and their firstborn child who participated in a 3-year longitudinal study. At the first and sixth postpartum months, parents’ plasma OT was assayed, parent–infant interactions were videotaped and micro-coded, and allelic variations on the OXTR(rs2254298, rs1042778) and CD38rs3796863 genes were measured. At 3 years, parents’ and child’s salivary OT was assessed and children’s social reciprocity observed during interactions with mother, father, and their first best friend. Parents’ OT levels were individually stable across the 3-year period, correlated with low-risk OXTR and CD38 alleles, and predicted child OT. Child’s social reciprocity with friend was associated with child OT levels, mother’s OT-related genes and hormones, and mother–child reciprocity, but not with father’s genes, hormones, or behavior. A cross-generation gene-by-environment effect emerged, with low child OT levels predicted by the interaction of maternal high-risk CD38 allele and diminished maternal care in infancy. These results demonstrate individual stability in peripheral OT across several years and describe a cross-generation transfer of OT through caregiving in humans within a prospective longitudinal design. Consistent with other mammals, biobehavioral experiences within the parent–infant bond shape children’s affiliative biology and social behavior across multiple attachments. Our findings bear important implications for conditions involving disruptions to maternal–infant bonding and underscore the potential for peer-based interventions.
One Mom's Story
We are families just like yours who have learned of this diagnosis and struggled with it and have come to accept it and to move forward. Our children are various ages and stages, but we have all held that little hypotonic baby and wondered if he would ever cry or hold his head up or eat like he was hungry.
Rest assured that he will cry and hold his head and he will eat and he will smile and he will sit up and crawl and walk and talk. All these things will happen with his and your perserverance. These milestones may come more slowly for him than for other children, but they will all come. You may feel heartbroken and sad right now, but take heart - all of us will help you through this time.
First, when he's awake - and that's probably very rarely right now - stimulate him. Talk to him. Smile at him. Encourage him. His brain is working - it's his muscles that are forcing him to be still. Hold him and snuggle him. Talk to him constantly. Just because he's quiet doesn't mean you have to be.
Next, you need to contact the Early Intervention/Infants and Toddlers Program in your county and get him started on physical therapy (PT), occupational therapy (OT) and speech therapy (ST) - yes, ST at only 3 weeks old - this and OT will help with feeding issues.
You need to talk to your geneticist about getting your child started on growth hormone (GH) right away. Have him refer you to a pediatric endocrinologist who believes in starting GH early. You don't need to wait until he's over a year old. Most of the children in this group are on GH and are meeting milestones sooner. Also talk to your geneticist about a supplement called CoEnzyme Q10. Most of us give it to our children each day in the morning. You can buy it over the counter at most pharmacies. There is a company, CytoMed, in Florida that gives discounts to prader-willi families. Dr. Judy (the company's owner) will help you determine dosage, how to best administer it, and can even overnight it to you. The phone number is 941-751-2872.
I know this is overwhelming and scary. But please know that we've all been there. Being part of this group will give you the most up to date information on real life PWS kids today. Much of the information on the internet is old and outdated and does not come close to describing the outcome that our kids will have. Don't bother reading it.
My son is 7 months old. He is doing well. There are days that go by now where I do not dwell on the fact that he has PWS. I always know it's there. But it does not run our lives. We deal with it. He drinks from a bottle very well. He eats baby food from a spoon. He holds his head very sturdily and he giggles! 6 months ago I was where you are and I promise you, it will be OK.
Most of all, love your baby and know that while he may have trouble showing you right now - that he loves you and needs you to be his advocate and get him the therapy, supplements and meds that he needs to become all that he can be. You can do it.